Akeelah's Mommy
- Apr 25, 2012 5:43 am
(#82 Total: 253)
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A moment in our arms, a lifetime in our hearts. |
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Maddoxmom
- Apr 26, 2012 2:54 pm
(#83 Total: 253)
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I'm new to share, and looking for other parents who have gone through similiar situations with their children. My pregnancy was perfect; I barely had any morning sickness. Then, at 28 weeks, the day after my baby shower, I went into labor. Maddox Ford was born November 7, 2011 with a rare skeletal disorder called campomelic dysplasia. This disorder only affects 1 in 200,000 babies, and is almost always fatal. With this disorder he had clubbed feet, bowed legs, one leg was shorter than the other, one arm was shorter than the other, but mainly, his chest cavity was too small to support his lung function. Most babies who have this disorder only live 2 days. He fought so hard for 7 weeks, but passed away on December 26, 2011. He made me so proud. I am so very thankful for the time I got to spend with him, holding him almost every day, and all the pictures of my beautiful baby, but it will never be enough. The what should haves and the hopes and dreams that I had for my first child haunt me. The biggest issue I am struggling with is seeing other parents with their babies.
maddox cubs
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Akeelah's Mommy
- Apr 27, 2012 1:16 am
(#84 Total: 253)
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A moment in our arms, a lifetime in our hearts. |
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Welcome to Share. What a sweetie pie your Maddox is! I'm so sorry his time here was so short. I too thought my pregnancy was just splendid until it wasn't and we said goodbye too soon to our lil' girl. The pain and would of could ofs are so very difficult, and oy, seeing other families living our dream- it feels so unfair. Share is a wonderful place to find support and parents in similar situations. There is a great thread called Living with a New Normal that you might want to check out too: http://www.shareyourstory.org/webx/.ef9d38c/254 Take good care,
Lauren
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Mary Ann C
- Apr 27, 2012 1:44 pm
(#85 Total: 253)
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Replying to:
mfloersch (Apr 23, 2012 6:31 pm)
Hello to everyone,
I'm a mom to a 28weeker, who's now 15months old.
I'm interested to see...
Hi...I am also mom to a 28 weeker...my son Jack was born April 29, 2006 and weighed 2 lbs 2 oz. This coming Sunday, he will turn 6. He is doing great!!! I shared our story last night....I meant to do so earlier and finally got to it. If i can help in any way please let me know.
Mary Ann
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Mary Ann C
- Apr 27, 2012 2:01 pm
(#86 Total: 253)
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Replying to:
melloveskeaton32112 (Apr 15, 2012 12:50 am)
Hi everyone! Just joined the site today and trying to navigate my way through everything. My first baby boy has...
Hi...my son Jack was born at 28 weeks on April 29, 2006. Jack will be 6 this coming Sunday and is doing great! I always meant to post our story so that I could help others through the roller coaster ride that we went through at the beginning. With 3 kids: a 15 year old, a 14 year old, and a 6 year old, I finally got the chance to write our story last night.
Best wishes to your family and please let me know if i can help with any questions.
Mary Ann
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savannah_2011
- Apr 29, 2012 7:17 am
(#87 Total: 253)
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Hi!
Im a late night internet searcher..lol..my daughter was born last august..althought her due date was in october..she was 9 wks early..but tried to come 13wks early..was in the hospital for a month before I had her..to make a long story short is was scary, miserable, and felt never ending..but all worth it in the end..I have a healthy baby girl! she is a very very fussy baby..but almost 9 months old with big bright eyes and a beautiful smile
ICU
100_3313
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savannah_2011
- Apr 29, 2012 7:27 am
(#88 Total: 253)
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Im sorry for the loss of leah and excited for the progress of hannah..I personally havent experienced a loss of a little one..but I was hospitalized for a month before giving birth to my daughter 9wks early..she stayed in the NICU for 5wks..it is extremely rough for any one..rather it be a day,week, month or longer..I wish I would have thought of looking at this website when I was going through all of this..it would have been nice..you all are very strong women..I am sorry for everyone who has mentioned a loss on here..and I am always here to talk..and Kelly I hope you are working on getting the closure you need..if not dont hesitate to reach out!
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KHolley
- Apr 29, 2012 11:46 pm
(#89 Total: 253)
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Welcome to Share, Mary Ann!!! I love hearing from moms with older kids that are doing well!!!!
Savannah-Your daughter is adorable! I am so happy that she is doing so well after such a scary start! Welcome!!!!
Katie
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savannah_2011 (May 12, 2012 6:55 pm)
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SarieP
- May 4, 2012 5:59 pm
(#90 Total: 253)
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I am new to Share and just posted my "short story". My name is Sarah and I am 26 years old. I have been married for almost 3 years now to Charlie. After a long struggle we became pregnant with twins in November 2011. My pregnancy had no complications until a routine appt in my 25th week. I was dialated and rushed to the hospital. I spent two days on bed rest and then I delivered my daughter and son at 25w5d on Apr 28, 2011. Raegan Lila came first at 1lb 9.5oz and 13 3/4in long. Liam Charles was second at 1lb 15oz and 14.5in long. They both cried when they came out and then were rushed to the NICU to be intubated. Sadly, our little girl did not make it past the next day due to a hemorrage in her lungs. Our son spent 100 days in the NICU and came home on his due date. He was on oxygen at home for a few months but just turned 1 a few days ago and is completely healthy! I look forward to speaking with other moms who have been through a loss or premature birth.
[Last Editor: SarieP, May 4, 2012 6:00 pm. Total Edits: 1]
LiamOneYear_006
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KHolley
- May 5, 2012 12:19 am
(#91 Total: 253)
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Welcome to Share. Your son is absolutely adorable! I am so sorry for the loss of your sweet little girl. Hugs.
Katie
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Oangelaola
- May 10, 2012 5:56 pm
(#92 Total: 253)
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Hi everyone:
On May 2nd we welcomed into the world the new love of our lives, Ariyanu Enitan. Ariyanu in my language means "we have seen a miracle" and Enitan means "born with a story". I just posted my birth story/blog and I found it to be the most cleansing experience as I wrote down everything that had happened. She weighed 1 pound 7 oz and is in the NICU. As most of you I thought I would have a full term baby and have gone through some emotional roller coasters. The NICU is full of parents like us who need support. I am extending prayers of comfort to those of us who have lost a child and prayers of healing to those of us still in the struggle. I started Kangaroo care with Ari this week and it has been the best experience for her and me. She is a lot calmer when she sleeps on my chest and I feel the connection to my child even though it is for a short time the bonding has started. I recommend you ask if you can hold your baby, that is the greatest feeling in the world...God bless you all!
[Last Editor: Oangelaola, May 10, 2012 5:56 pm. Total Edits: 1]
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liz loschinskey (May 10, 2012 6:24 pm)
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liz loschinskey
- May 10, 2012 6:24 pm
(#93 Total: 253)
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Replying to:
Oangelaola (May 10, 2012 5:56 pm)
Hi everyone:
On May 2nd we welcomed into the world the new love of our lives, Ariyanu Enitan. Ariyanu in...
Welcome to Share!
I read your story and cried at the sight of beautiful Ari!
I'm so glad you found us and can't wait to ready your next update!
Love and Light,
Liz
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Oangelaola (May 11, 2012 12:58 am)
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Oangelaola
- May 11, 2012 12:58 am
(#94 Total: 253)
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Replying to:
liz loschinskey (May 10, 2012 6:24 pm)
Welcome to Share! I read your story and cried at the sight of beautiful Ari! I'm so glad...
Thank you so much Liz. Thank you for writing on my blog. Sending you positive and best wishes. Blessings and Peace- Busayo
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savannah_2011
- May 12, 2012 6:55 pm
(#95 Total: 253)
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Replying to:
KHolley (Apr 29, 2012 11:46 pm)
Welcome to Share, Mary Ann!!! I love hearing from moms with older kids that are doing well!!!! Savannah-Your daughter is...
thanks you so much..i think she is pretty cute as well..and actually her name is savannah...lol..
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MonaClare
- May 22, 2012 2:10 pm
(#96 Total: 253)
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Hello! My name is Monica and I am new to March of Dimes. My baby boy Jace was born at 24 weeks and 2 days on April 9th. His due date was July 28th. My Husband's name is Jay. This is our first baby together. We have been married for 2 yrs. I have 1 biological son who is 16yrs old (I had him when I was 17), my step daughter, 11, lives with us full time, and I have 2 step sons, 12 & 14.
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liz loschinskey (May 22, 2012 10:14 pm)
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KHolley
- May 22, 2012 4:13 pm
(#97 Total: 253)
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Welcome to Share, Monica! Congrats on Jace! I look forward to reading more about you and your family!
Katie
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MonaClare (May 22, 2012 4:17 pm)
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MonaClare
- May 22, 2012 4:17 pm
(#98 Total: 253)
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Replying to:
KHolley (May 22, 2012 4:13 pm)
Welcome to Share, Monica! Congrats on Jace! I look forward to reading more about you and your family! Katie
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liz loschinskey
- May 22, 2012 10:14 pm
(#99 Total: 253)
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Replying to:
MonaClare (May 22, 2012 2:10 pm)
Hello! My name is Monica and I am new to March of Dimes. My baby boy Jace was...
Hi Monica! Congratulations on your sweet baby boy, Jace!
Welcome to share and I hope to hear more about Jace!
Love and Light,
Liz
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angiemarie1980
- May 23, 2012 5:51 pm
(#100 Total: 253)
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hi my name is angie breahna is my daughter who was a premiee back in 2004 she spend 52 days in nicu.. she is 7 years old will be 8 in 9-7. she is being held back in 1st grade this year, im just a mother who doesnt know what to do she is very lucky to be where she is but still very behind for age. some times its kinda like her brain doesnt get things from homeowrk.. so taking baths she just doesnt seem to understand or get why we do things.. just in need for help or just someone to talk to thanks
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scardycat (Jun 1, 2012 9:31 am)
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KHolley
- May 24, 2012 12:27 am
(#101 Total: 253)
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Welcome to Share. It is so hard to decide what's right for our kids. Trust your heart.
Katie
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Team Jesse
- May 25, 2012 12:55 pm
(#102 Total: 253)
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Angie, my son was a preemie born in 2007. He turned 5 on feb 12. I can relate with what you said about sometimes her brain just doesn't get things. Now my son has been diagnosed with a few things, but we run into the same issues with him. He does really well so far in pre-k but sometimes when you ask him something or tell him something we have to repeat ourselves or explain to him what we are saying. It's just the way his little brain processes certain things. We describe it as his brain is just going off in different directions and we have really come to understand that about him. Have you asked her doctors about it?
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Salwa Mornie
- May 30, 2012 1:56 pm
(#103 Total: 253)
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Hi, my name is Salwa Mornie. I'm 34 years old and gave an emergency C-section birth a week ago to a 1.46kg girl due to a complicated preeclampsia. My daughter is now in SCBU/NICU as she was born 7 weeks earlier than she should have been. She is now hospitalised and I'm back home without her but am told to express my milk to be given to her via a tube. Everything is very difficult for me to accept at the moment but I'm trying my best to be strong for her. I found this website and feel that it could be a good emotional outlet for me. I hope to read more inspirational stories from all the mothers here.
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liz loschinskey (Jul 3, 2012 11:49 pm)
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KHolley
- May 30, 2012 5:15 pm
(#104 Total: 253)
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Welcome to Share, Salwa! Congrats on your little girl! I had my daughter at 34 weeks and she is now 6. Please feel free to ask me anything.
Katie
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Trinity8409
- May 30, 2012 5:30 pm
(#105 Total: 253)
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Hi my name is Nicole, I am a 28 year old mother that had a premature baby, I also was a premature baby. My baby was born at 32 weeks and weighed 3'14 oz. Me I was born at 26 weeks and only weighed 1'11oz. I have had 5 pregnancies and this was my first premature birth. I was scared at first but then when I got to the NICU at Miller Childrens Hospital in Long Beach the nurses really helped me and my husband. If anyone wants to follow how my baby has been doing I will try to post blogs about him everyday or when we have any new news.
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Angel Love
- May 30, 2012 8:58 pm
(#106 Total: 253)
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Welcome to Share everyone!!! I understand there are a lot of questions regarding your new little ones, but the best place to find those answers is your ped or neonatologist! It's hard to understand all that goes on in these new little lives that is different from the full term pregnancy, but those professionals are there to help. I hope to hear great updates from each of you!
Tracy 
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Kcurvey
- May 31, 2012 12:57 am
(#107 Total: 253)
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Hi, my name is Kelly and I am 28 years old that just had a premature baby. I had 2 preemies before this but they were too small to save. I just had my son Bentley on Friday, May 25, 2012. He was 14 weeks early. For the first 4 days he was doing great. Breathing on his own 12 hours after birth. Today he had an "episode" and was holding his breath. They had to bad him to put him back in rythem. I am so worried. I cant eat or sleep. I cant go to the hospital everyday because i was on bedrest and couldnt work so i dont have the gas. And we live an hour and half away from the hospital. I came here hoping to find weman that have gone through similar situations. I would just like to find out what to expect through this process. 
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Angel Love (Jun 2, 2012 2:47 am)
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stacyat
- May 31, 2012 2:17 am
(#108 Total: 253)
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Mom to Emilyn and Hailey (our 20 week angels) and Elim (our 38 week, full term miracle)! |
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Hello and welcome to Share, I am so sorry for the loss of your little ones and that your sweet Bentley came so early despite your cerclage. Is there a Ronald McDonald house anywhere near your hospital? I'm sure it is tearing you apart not being able to be up there with him every second. Tons of hugs and prayers to you!
Stacy
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scardycat
- Jun 1, 2012 9:31 am
(#109 Total: 253)
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Replying to:
angiemarie1980 (May 23, 2012 5:51 pm)
hi my name is angie breahna is my daughter who was a premiee back in 2004 she spend 52...
It's Ok Angie my daughter was born at 34 weeks and she was the same especially in primary school. We held her back in grade 1 and it was a good idea. It took her a while to just get it. All of a sudden it just clicked about grade 5. It could be earlier it depends on the child.
Her teacher said she would and omg she was right.
If your are really concerned speak to her teacher about how shes going and maybe get her checked out if you feel something is not right.
My daughter is now 19 and shes doing a graphic arts course at Tafe.
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Angel Love
- Jun 2, 2012 2:47 am
(#110 Total: 253)
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Replying to:
Kcurvey (May 31, 2012 12:57 am)
Hi, my name is Kelly and I am 28 years old that just had a premature baby. I had 2...
Welcome to Share Kelly! I'm so sorry to hear of your losses, but am happy to hear of your little fighter Bentley! I know it's hard to be away from your little one, but stay strong...he feels your love!! Check with the hospital social worker to see if there is a place to stay nearby that will allow a huge discount if there's not a Ronald McDonald House. Hang on tight....it's a crazy journey, but being there as much as possible and trying to be a part of his care will help both of you. Tracy
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Ljane627
- Jun 6, 2012 6:44 am
(#111 Total: 253)
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Hello,
My name is Lisa. I gave birth to my beautiful Stella on May 13th (Mother's Day). She was 31 weeks and 3 days. I was induced due to developing preeclampsia. She is my second daughter. My eldest daughter was also early. She was 36 weeks, and stayed in the NICU for four days.
Stella is currently in the NICU and has been doing very well. Her feeding line has just been removed.
I'm hoping someone can tell me what hurdles she needs to accomplish before they will allow her to come home.
Thanks for reading...
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